Epilepsy Awareness & why I'm thankful

Did you know that Epilepsy Awareness month started on November 1st? Many of you won't think twice about it being anything other than Thanksgiving month. For our family, we don't need a special month to be aware of Epilepsy. Our lives have been consumed by it since December 30, 2006. That was the day that C-monkey was diagnosed with Infantile Spasms, a catastrophic seizure disorder (not a muscle spasm as many think of when they hear the name). Our family has been affected mentally, physically, emotionally, & financially by Epilepsy. A day doesn't go by where we don't feel the after effects of C's brain being ravaged by years of seizures. I see a lot of folks on FB posting something they are thankful for every day starting on November 1st, so instead of this being a sad post about how hard life with epilepsy can be blah, blah, blah...I'm going to post the things about Epilepsy that I'm thankful for. Didn't see that one coming did you?

Because of Epilepsy:

~I've met some of the most incredible people. People that truly love my child. People that have embraced our family with open arms. People that have helped me fight when I just wanted to give up. People that prayed for, cooked meals for, & supported us through the really hard decision of having brain surgery. People that I've never met in person, but have met through this epilepsy journey because they too were traveling the same road. They have virtually held my hand & given me valuable advice. 

~I've met some of my bestest friends because more than likely they have children with special needs too. They get my wacky sense of humor. They know that I have sad days, & that sometimes it's sad weeks. They get the emotional roller coaster I'm on during birthdays or periods of transition. They are ok with me being myself & dropping the BS because "ain't no one got time for that".

~I understand that it could always be worse. I've seen families on all ends of the spectrum. 

~I'm more thankful for the little things. When C ate some goldfish crackers the other month (his first crunchy food since surgery), you would have thought he had just slam dunked on Lebron or discovered the solution to the deficit. I was THAT proud! In the same respect, I'm so incredibly thankful for each new milestone that baby bug accomplishes. A lot of them that C never accomplished or did really late. 

~I don't sweat the small stuff (well, not as much as I USE to!). Yes, my house is a wreck sometimes. Laundry sits on my love seat for a few days longer than I'd like. There are more important things in this life than making sure my house is spotless at all times. I don't want "her house was never messy" on my tombstone. I'd much rather it say that I was a good mom, wife, daughter, friend, etc.  

But more than any of that...on November 1st, the start of Epilepsy awareness month, I'm thankful for the 18 months of freedom we have had from the seizure monster! I'm thankful for the new skills that C monkey is learning, now that his brain isn't being ravaged multiple times a day by seizures. I'm thankful for the great reports I get from school now. The videos from his awesome speech therapist of the amazing things he is doing that I never thought possible, but always hoped! The joy he gets from his very first best friend-his baby sister. I'm thankful for bear hugs, giggles that speak volumes, & the way he expresses that he wants our attention by touching our noses. I'm thankful that I'm a good exhausted from happy things instead of worn down from starting our day with seizures & sadness. My kiddo is my hero. Hands down. Every day.

As great as all of this is, & it's pretty damn great, I want to always be AWARE of epilepsy. For the families still fighting. For the families starting the fight. For the families that have lost the fight. For us as we fear of it returning, because we were never promised this freedom, but for some reason it was our time.  For THAT I am thankful. Eternally grateful. 

Why 8month olds scare the s#*t out of me

Baby bug recently celebrated a milestone. A milestone that I've been dreading, if we are being honest. On Saturday she turned 8 months old.

What's the big deal with 8 months? It doesn't sound like a "scary" age.

For most families it isn't. For us it is the age that our world came crashing down in a matter of days. When C-Monkey was 8 months old he began having seizures. He was diagnosed a day later with Infantile Spasms. Most people think the diagnosis Infantile Spasms sounds pretty benign. It's not. It's catastrophic. It's devastating to be a parent on the other side of that diagnosis. 

For those of you that are fortunate enough to not know much about it, here's what the National Institute of Neurological Disorders & Stroke (NINDS) defines it as:

"An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found"

That is C-Monkey one day before he turned 8 months old. Just looking at him you would have never guessed the levels of devastation we would be facing roughly a week or so later. We heard it soooo many times after his diagnosis, "But he's so normal". He was meeting milestones. He was social. There were areas that we thought he was behind on, but our doctor played it off on him being a boy. Apparently boys tend to develop slower than girls? I thought of including the video here of his first seizure. We were fortunate to be able to catch it on video in case the doctor needed to see it. I just can't do it. I just can't bring myself to share one of the top 2 saddest days of my life...in real life. It's too raw. Too painful. That is something we've never shared...with anyone.  You can google Infantile Spasms videos. Unfortunately there are hundreds.

We've been through so much with C-Monkey. I really didn't think we would have another child. I didn't think I wanted another child. We couldn't face potentially going through that again. All of our Doctors told us the odds of having another child with IS was very small, but I wasn't sure I was brave enough to take that risk. It took a little surprise at a crazy time in our life to change my mind.  My OB-GYN was so supportive and encouraging and looked out for every little thing.  He knew I was absolutely scared to death. My friends gave me much needed pep talks. The time came & Baby bug was born...healthy. That should have alleviated my fears. Everyone kept saying "she's healthy!!!". Yes, so was C-Monkey when he was born. 

I remember breaking down at her 2 month visit. I told the Dr that I was absolutely scared to death of every little thing with her. I evaluated everything she did every single second of the day. I felt like I really couldn't "enjoy" the experience. He said he would be stunned if I wasn't like that with all that we had been through with C. It wouldn't be natural. This is very likely my last baby & I didn't want to spend my time with her, time that flies by so quickly, worried to death. I gave a speech at one of our local universities about our experiences with C. One of the students, knowing I had recently had a baby, asked me would I or was I doing anything differently with Baby Bug given our past with C-monkey. I told her "Absolutely". I look at every experience with her and compare it to C. I obsess over those bleeping ASQ (developmental screens) in the months between visits to the Dr. I consider them homework. I have to get a good score!! I probably push her to do things more than I did (& still do) C-monkey. I realized to her I probably sounded like a complete nutso. What she didn't realize, is that I consider everything that C-Monkey doesn't do as a reflection on ME as a mother. I know to many of you that sounds so absurd because there is nothing I could have done to prevent this, but I've spent a lot of time grieving that something that happened when he was in my womb probably caused this. I know my Mommy warrior friends "get this". 

Fortunately, Baby bug is a very determined little gal and really likes being pushed and encouraged to do new things. She has met and exceeded milestones at every visit. With time she has slightly eased my worries. That was until 8 months. My panic is back at Code red. She hasn't really given me any cause for concern, but a few close friends & a few of C-monkey's therapists have had to talk me down during freak out moments. They've reassured me that she is FINE.

Baby bug at 8months. 

I'm sure I will always be a worry wart when it comes to BOTH of my kids. I've been trusted with 2 of the greatest gifts I could ever wish for. I don't want to take any moment with them for granted. I just need to learn to RELAX where Baby Bug is concerned, and learn to appreciate each moment as they come....

Maybe when she turns 9 months old?? ;)

Suck it Seizure Monster

Yesterday we celebrated a HUGE day for our family. It was one that stayed in my mind and my heart all day. When you are a parent of a child with special needs, some anniversaries are engraved in your memory: diagnosis day, big milestones post diagnosis, big surgery dates, and for us...the date we evicted a certain monster out of our house. I wanted to shout it from the roof top. Take an ad out in the paper. Heck, take an ad out in a major magazine! Make a commercial. You name it. Instead, I put a cryptic status update on FB when I got home from the gym last night: 

"So today was kind of a HUGE day for our family. I hesitated to mention it because I know so many families that long for a day like today. I know the sting of that feeling. And I know that days like today can vanish at any time. But, my boy (not me) deserves the recognition. So...today was a HUGE day. Enough said. ;)". 

I didn't want to rub it in anyone's face. We know so many that are battling that jerk still. I still know the sting of the longing for seizure freedom. I didn't want it to appear that our life is perfect.  I know that he could creep back into our door at any moment. We cautiously look over everything C-monkey does at all times. Could that be a seizure? What was that?? The craziest little movements could be seizures!! We are still on high alert. Yes, the monster is away, but the effects of his 5.5 years with us are still lingering. C-monkey is still very significantly delayed, but he has really come so far in the past year without the jerk. 

That was C-Monkey on Easter 2012, four days before his surgery. That was a face we were so used to seeing for the preceding few months. So tired. So vacant in some ways. His days consumed with limiting seizures. His sweet laugh g-o-n-e. It was that child that challenged us to make the hardest decision we would ever make as parents. He desperately needed help.

Dr. Neuro & Dr. Neurosurgeon stressed to us this surgery would not stop his seizures. It would reduce his seizures. Hopefully reduce them and focalize them so that we could do another surgery down the road that would potentially stop his seizures, and give him more quality to his life. We had our hopes dashed with every med we trialed. Every alternative treatment. We had come to know failure. We weren't expecting much. That's not our luck. We just hoped for sporadic days of no seizures or only a few. Few enough to give his brain a break. On April 30th, he had a couple of seizures. He had been having a few every now and again starting the day after his surgery. We knew that was what was likely to happen. It was still better than what we were used to. On May 1, 2012 we noticed he didn't have ANY seizures all day. On May 2nd...still no seizures. A week went by, no seizures. Eleven days went by..no seizures. A month turned into three months. Six months went by...no seizures. Baby bug was born. I figured it would be THEN that the good luck would end. God was just giving me a break while I was pregnant, right? I at least deserved a break then. Six months turned into 9 months. And then...we celebrated (quietly) ONE monumental year. No seizures!

This was C-monkey on Easter 2013. What an incredible difference a year makes!! He laughs his head off. He is so attentive to others. He's more focused. He has learned new skills. He walks without the balance issues that plagued him before. He's so incredibly loving. His teacher sent me a text yesterday bragging that C-monkey has an older girl in his class that he "helps". When she is in her walker, he gently pushes her along from behind. He also loves to push this little girl's wheelchair to the bus. I think it is because he has been pushing Baby bug's stroller when we go places to help with his sensory issues so he is assuming his Big brother role at school too because we praise him so much for it at home. 

 

 All of that makes THIS image that is forever burned into my heart and soul so very worth it. I pray this streak continues. I pray that the few challenges that C-monkey has had as a result from the surgery improve with time. 

 So, we celebrate the year (quietly still, as to not awaken the monster) and hope for more years of this sweet boy thriving. We will never forget our years with the monster, but we would like to make so many more memories WITHOUT him! 

We had a secret. A BIG secret!

I told y'all I'm not great at keeping up with a blog. Yes, I realize tomorrow will be a year since I last posted. Life has been busy. VERY busy! You see, when I last posted I was keeping a secret. A VERY big secret!

Let's jump back to March 25th, 2012. For about a week before that date I was not feeling good. Not at all. I was nauseous all the time. I kept having these weird dizzy episodes. Headaches like crazy. I kept passing it off as stress. It made sense. I was going through one of the most stressful times any mother could go through. My baby was getting ready to have major brain surgery. I finally looked at the calendar. Really looked at it. Oh my GOD. No way. That evening I ran to the store, and hid in the bathroom when I got home. James busted in there and saw what I was doing. I let him do "the read" because I knew FOR SURE it was "just stress". Boy, was I wrong!

Yep, a little less than three weeks before C-monkey's surgery I found out I was pregnant. WTH?!?! Let's just say between the 2 of us we had a couple of hours worth of cries, freak outs, laughs, & worries. I could not believe this was happening. How was I going to handle going through C's surgery as awful as I felt? How was I going to handle TWO kids?? I think my greatest worry was, did God plan this because something was going to happen to C? I know, I know. Rational thinking wasn't my forte during this period of time. I read into everything on a good day. Add in major life stresses and I'm a paranoid nut job. We swear to keep this a secret. Ummm, I might have told a couple of close girlfriends. I was monitored very closely in the beginning due to a situation we had the year before. I think my OB/GYN also wanted to reassure me that I was going to be okay with everything going on.

A week before C's surgery we got to take a peek at the little peanut.

So, we began to plot how we were going to tell our families. They HAD to know before the surgery! We knew we would be gathering for Easter. That would be the last time we would all be together before the big day. We let C-Monkey break the news for us. Everyone was STUNNED (join the club)! There was excitement and worry. Lots of worry for me.

C-monkey in his "surprise" shirt on Easter.

Surgery day came and went. (I'll talk about his surgery in my next post.)The hospital stay was ROUGH. Thank God for my hubby. He really did most of C's care post-op. I was so horribly nauseous every single day right at 2:00pm until night time. Smells killed me. There are LOTS of smells in hospitals. Most of them are not good either. Even the smell of his food made we want to run for the hills. Except I couldn't run if my life depended on it because I was utterly exhausted. We finally had to tell the nurses so they didn't wonder/worry why I slept so much. Oh, and the headaches!! I was a mess, and so desperately wanted to be "with it" to take care of my boy. I felt so selfish.

After about my 13th week I started feeling human again. Right around that time I was diagnosed with placenta previa (where the placenta blocks the opening of the cervix and puts Mom at high risk for bleeds). Really?!?! My Dr told me no more picking C up. No more picking up anything heavier than 5 pounds actually. If I bled I would end up on bed rest. This baby was really testing me. Looking back, all of this was forcing me to take care of ME..someone I had neglected taking care of for years. I had to take it easy...Dr's orders.

I know most people always say "Oh, I don't care if it's a boy or a girl. As long as they are healthy!".  Well, we actually MEANT it! When you go through the kind of struggles that we have been through with C, healthy is the ONLY thing that matters! Secretly, I longed for a baby girl. I thought a girl would be more attentive to C as they got older. I knew I wanted one of each. That was only fair. A healthy little girl with blue eyes. That was my hope. At 19 weeks weeks we found out we were having......

A GIRL!!!!

Other than some wicked anemia, the pregnancy stayed par for the course. It was exhausting being pregnant with a very time consuming child. I had ultrasounds at least once a month. My placenta wasn't budging (aka-the exit ramp was blocked) so my Dr wanted to avoid any risks of hemorrhaging as I got further along and planned for an early C-section. I found out we would meet our baby girl on Tuesday, November 6th...Election Day. J's birthday was 2 days later so he was getting an awesome birthday gift! As time got closer I worried more and more about how adding a baby was going to affect the dynamic of our house. C had ruled the roost for over 6 years. How in the world would I balance the attention that C required and a newborn? Would she accuse me years later of favoring C because he got so much attention? And the one that most Moms going from one to two kids struggle with...Could I love this little girl as much as I love C-monkey? He's had me to himself for 6 years. I love that boy something fierce. We've been through a lot together. I worried about leaving him. We had both only been away from him for one night, twice. I was going to be in the hospital for 3 nights! That was 2 too many! I had list after list of C-Monkey notes for his Grandmas. My lists started having lists, but with kids like C you MUST prepare! There is no such thing as just dropping him off and saying, "Have Fun!".

C-monkey "talking" to his baby sister

Delivery day came. I cried my eyes out when I left the house. Our lives were getting ready to change FOREVER!

At 1:29p.m. on Tuesday, November 6, 2012 we welcomed Baby KAM. She weighed in at 6pounds, 7ounces & was 19inches long! It was love at first sight!

 

C-Monkey met his baby sister the next morning, and he was NOT impressed.

 Life was very different from that moment on. C has learned to get used to KAM's cries. He likes her toys. He NOW thinks she is awesome. He just looks at her with such love and amazement. It truly melts my heart to see him look at her. She is still trying to figure him out though. LOL! 

 

Thankfully, she has been a very easy baby for the most part. She has been a great sleeper, and overall pretty mellow and patient (hope I'm not jinxing it!). I look forward to seeing them grow with one another. I pray that she is accepting and loving towards her brother. That she stands up for him. That she understands why sometimes he gets a little extra time. Oh, and I hope she KNOWS that I love them BOTH. I love them EQUALLY to bits. It is possible!

 

I thank her for bringing a peace back to my soul, and for healing my mommy heart. She is my sugar and sunshine bundled into one petite little smiling princess. She and her brother BOTH have my heart.

Miracles do happen when you LEAST expect them! I got my healthy, blue eyed girl!

And, now you know one of the reasons why I haven't been the best blogger over the past year!!

Dear C Monkey

Dear C Monkey,
Today we put you in the hands of a surgeon. A surgeon we have chosen to help save your life. I hope you know this has in no way been an easy decision for your Dad & I to make. Please know that we would put ourselves on that table if we could. This will most likely be the single hardest day of our life. The hardest part, other than knowing if we have made the right decision, is how all of this is going to turn out. I watched you sleep last night & prayed for God to have his hands on you when I can't.

Today, when the hours go by & we pray the Dr will be able to help you, I will be thinking of:

the day you were born & what a surprise that head full of hair was

The first time you smiled.

What a happy baby you always were in the morning.

How excited you get for all of your favorite toys.

The cute "bounce" you do as you walk around the house.

All of the hugs & smiles that have melted my heart over the past 5 years.

The way you have wrapped me around your finger since the day you were born.

I will leave you on that OR table & pray we experience even better times because of this choice we have made.

I love you with all my heart C Monkey, I am so lucky to be your mommy! I will ALWAYS be here for you!

"Thank you" seems so small

As we prepare for C-Monkey's surgery tomorrow, I knew I had to take this time as we are riding down the road to express some serious gratitude. We knew people cared for C and for us, but never to the extent we have realized over the past few days.

J & I have always been the types to decline any sort of help. It's just who we are. We've always been of the mind-set that someone out there needs it more. So when friends, co-workers, acquaintances, etc asked us to let them know what we needed or how they could help, we always say, "thank you, but we have it all under control." It has only been recently that we have realized people are not doing this out of pity, but they WANT to help! They want to take a load off of us. We are going through life changing, heavy stuff here. No one can tackle that for us, so they want to do SOMETHING to ease the burden. We have had to drop pride to the side, & just be thankful that we so many people cheering on, praying for, and supporting our family!

Over the past week, people have sent cards, added us to prayer lists at church, given us money & gas cards, started meal lists for once we get home, brought us food, given us hugs, and checked in non-stop to see what they can help with. For all of this we are humbled and blown away. "Thank you" just seems so small. Not nearly appreciative enough. Just know that EVERY gesture is appreciated, and we can never, ever thank you all enough! Our cups truly runneth over.

Our Pre-op Meeting with Dr. Neurosurg

Well, it seems to be a running fact that it takes me a week to process things before I can post them on here! Either that or I'm just a lazy slug.

We met with Dr. Neurosurg last Wednesday for an epic appointment. Epic in how long we were there. Holy cow, we should have packed a picnic because we were there for over 3 hours! We had an appointment with the surgeon at 9:15, and we waited an hour to see him. (Meanwhile, I amused J with all of my hilarious Pinterest jokes, the 3 of us had a Goldfish picnic, I may have snooped through medical supplies, etc.).

Dr. Neurosurg came in and must have known he was going to be bombarded with a notebook of questions. Yes, I had one.

He said they had spent  over an hour during their conference discussing C-Monkey's case. They actually spent so long on him that they didn't get to discuss the other kid that was on the schedule for that day. Oops! He said that Dr. Neuro really fought hard for C. They just could not justify doing anything more extensive than the Corpus Callosotomy (CC) as it was too much of a risk...at this time. His seizures are just too over the place for us to safely remove any particular area. It's not like we can go, "Oh crap that wasn't it, let's hot glue that piece back in!". He stated several times that they all agreed we needed to act quickly once this surgery was done. Their goal/hopes is to have the CC performed, give C time to heal (a couple of months?), and then do another EEG.

Their hope is that one will finally show a definitive focus. Preferably that right sided area. We'll kick THAT monster's ass when we get there.

The nitty gritty of surgery week (I feel like it should have dramatic music & graphics like Shark Week):

We will have another MRI the day before surgery (our insurance company probably hates us at this point with all of the expensive procedures we've had done recently). We will find out our surgery time at some point that day.

He said the surgery (on 4/12) should take about 4 hours. They will do a complete disconnection instead of just the front 2/3. The incision will go across his scalp (think ear to ear, but not quite that long). C will go directly from the OR to the PICU.One of us will be able to spend the night in the PICU with him. Thank God! If he is doing well, he will be transferred to a regular bed the next day. He will get up & moving and start therapy probably the day after surgery.

We will hopefully come home a few days later, as long as he is meeting the standard discharge protocol....pee, drink, pain control, vitals stable. He will not be able to go to school for several weeks due to risk of him falling and hitting his head. He cannot wear a helmet due to it pulling on the incision. Several of our school team members are nervous to walk with him without a helmet on a good day, so him going without a helmet isn't really an option.

I also need him here with me. I need to be able to challenge this new brain of his, one on one. I need to prove that he CAN learn. He needs me to advocate for him. Prove that he needs people to believe in him, and not give up when his goals aren't met. I need to find the BEST way to work with him...to prove it is possible. Anyway, sorry for the field trip on Tangent Blvd. I just felt the need to mentally "dump" that.

Back to our previously scheduled journey....The funny part of our visit was I asked the surgeon whether he was right or left handed and he said "both" (impressive) & I then made him hold his hands out to check for any crazy shaking. He was still as glass. I told him he passed the test. Yes, I'm THAT neurotic, and I own it. I'm not sending Shaky McShakerson digging into my kid's precious brain tissue! His RN had told us earlier in the visit about them visiting our town a few night's before for a Bruce Springsteen concert. I also gave him orders that there is to be no loud concerts the night before! Mommy's orders. LOL!

We then met with the anesthesia team, the child life specialist (who talked so much that I zoned out until she sounded like Charlie Brown's teacher & J focused on how much she talked with her hands....lady this ain't our first time in the hospital for christ's sake!), and then he had labs drawn. We also found out that one of us can walk with him to the OR & stay with him until he goes to sleep. We didn't get offered that option for the VNS. I figured it might be a battle, but J knew he wasn't going to win it, so he has already conceded to letting me go back with C. I knew I married a smart man. He'll be standing at the exit with my box of Kleenex.

I've been on several shopping expeditions since our visit, and I've gotten several comfort items for the hospital stay trying to make it as pleasant as possible for C. My Mom is also making him some big comfy blankets in bright colors/prints to make the room a little happier. I got him a stuffed lamb pillow that has lavender in it that he can lay on, and a little lamb that is like the pillow and plays ocean and other water/nature sounds to help him sleep, some Johnson's lavender lotion, and some comfy new PJs. (If anyone has any other suggestions, please let me know!)

It will be a stressful two weeks leading up to the 12th, but I think we have finally realized that this is our only option.

We have tried all that we can.

We just have to let it be out of our control at this point.

What I do know is: this boy is getting the stuffing hugged out of him over the next two weeks (even more than usual), and his cheeks might be chafed from all of the extra kisses. 

We are so thankful for the outpouring of love, care, and generosity we are receiving. You never truly realize how much people care.  I may not ever be able to thank you all enough, but please know we are so incredibly grateful to those of you that have supported us through all of this! xoxoxo~M